Difficulties

I have been taking care of my mother now going on five years. Last year, I got married after returning from a deployment overseas. I have come to realize that I have been enabling my mother to lose her independence, and do not know how to undo the damage I have done.

I had made a promise not to place her in assisted living, until she was unable to do the basic activities of daily living, but I am now realizing that she is unable to not because of disease, but because of obstinance.

She is capable of doing a lot more than she does, but uses her diseases to hide from doing them. Simple tasks are not done because of this. We have a respite care provider come and help, but mom crosses the line.

I have set up transportation through the local public transit system, which my mother refuses to use saying that they come late to pick her up or early to get her from her appointments. Or, she will say that she can not go out on her own, because she gets too exhausted. Her exhaustion comes from refusing to realize that she is disabled, and not limiting herself. Instead of a 30-45 minute trip to get a few groceries, she stays 2 hours.

She refuses to take a shower in the winter months, because the bathroom is too cold (the house is set at 78 degrees, and the bathroom has a salamander heating lamp). She instead only sponge bathes.

Over the holidays, I spoke with my older sibling, and our wives about the situation, and realized that I have really been enabling this behavior.

Trying to help someone who refuses to help themself (to the best of their abilities) is frustrating at best, but I know that is no surprise to you, ((((SoldierSon)))).

I am not certain as to your mother's condition(s), but if you are able to have rational discussions with her, I would sit down and have a heart-to-heart about what you laid out here. Explain to her your challenges, and why you need her to work with you and not against you. In order for you to continue to provide care for her in the home, it is vital that she make some effort to care for herself in areas that she is able.

She may be relying on your promise of not putting her in assisted living, and is thus taking advantage of the situation by taxing your reserves. This is not fair to you and is counterproductive to her own well-being.

She also may be suffering from depression. Do you have good rapport with her doctor(s)? That may be a good place to start. Sometimes a combination of medication and/or therapy can help.

You need to establish what you are honestly able to do for her and where your boundaries lie. Does she need help getting things organized (as in a grocery list) or does she have trouble making decisions? If you can pinpoint where the challenges lie, you may be able to creatively work towards solutions. But she has to work with you on that.

You cannot be expected to be her full-time caregiver on her terms alone.

Also, find areas in which you can "give" on ways things get done. For instance, unless she is extremely active, I imagine that sponge baths "do the trick" as far as keeping her clean in the winter. My husband insisted on bathing himself for years, but I would go behind and "check" to make sure he did a thorough job. Personal hygiene directly affects you, as the lack of it can put an already ill person in jeopardy. Sometimes those we care for will not yield in certain areas - and if their way is "good enough", sometimes we have to leave that battle for another day.

I wish you strength and peace as you move forward. I do believe that our love for others, no matter how seemingly hidden, is not forgotten.

Difficult as it may be to do, saying "no" is oftentimes the most loving thing we can do for the parent(s) we are providing care for. We can say "no" in gentle and loving and supportive ways. For example, when my Mom, for whom I provide full-time care, tells me that she cannot do something which I know full-well that is capable of doing, I will simply leave the room for a short while and give her time to try. This has worked on the simple things like zipping up her jacket, or pouring cereal into a bowl, or cutting strawberries. When I return to the room, I give Mom positive, but not effusive, reinforcement for a job well done.

I worked for many years in special education, and I used this tactic often with middle school students. My working motto was, "You can do this, and I expect you to. I'll be back in a little while." Sadly, many of my colleagues did not support my pedagogy and they would often interfere and further the enabling of the student.

Let you Mom know that you love her, and that you know that she can do more for herself, and that you expect her to. Then walk away and see what happens. Start with small, but effective ways, such as meals. If she helps, she eats what everyone else eats. If not, she can make due with whatever she can manage. Obviously, we do not starve or abuse our care recipient(s), but when we set the bar high, we enable them to grow and achieve. When we set the bar low, we are essentially killing their spirit and purpose.

I applaud you for your work with your Mom. I, too, am not considering nursing homes at all.

Those of us who are caregivers for our parents, particularly those of us who do it full-time, would do well to keep in mind that it is easy to have our feelings get hurt by the parent(s). This is especially true when we choose to be the adult in the situation and make a decision that is difficult for our parent(s) to comply with. The heartbreak that I feel when this happens is beyond description. I hope that you have family or friends to spell you now and again. If you do, count your blessings.

Helpful Links

Caregiver Action Network

Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.